Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten-Free Diet Before Upper Endoscopy W/biopsy?


Arcana

Recommended Posts

Arcana Newbie

Hi everybody,

I am hoping somebody can give me some advice here!

I'm posting because I was recently referred to a gastroenterologist because my anti-gliadin IGA levels were very high, although my ttg was negative. I saw the nurse practicioner at a local GE office, and without looking at any other blood test (IGE, etc), the nurse practicioner scheduled me for an upper endoscopy and a colonoscopy. She said that there was a 99.99 percent chance that I had Celiac Disease, which she also kept referring to as a wheat allergy (sigh). She recommended that I start a gluten-free diet immediately, even though my endoscopy is scheduled in two weeks.

Is this normal? I kind of thought she would want to do some follow-up bloodwork to check for other things, and *maybe* do a biopsy afterwards. Also, wouldn't a gluten-free diet affect the biopsy results?

It's all so very frustrating, especially since my insurance is unwilling to pay for an anesthesiologist for these procedures (which the gastroenterologist inexplicably scheduled for two separate days)!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



psawyer Proficient

Going gluten-free in advance of the endoscopy can affect the accuracy of the biopsy. It is not a good idea.

I am amazed that the two procedures are not scheduled simultaneously. Once you are prepped and sedated for the colonoscopy, doing an endoscopy requires no additional prep. You should insist that they both be done at the same time.

ravenwoodglass Mentor

Do stay on gluten until the endo is done, if you are choosing to have it. With very high blood test results some doctors are skipping the endo for diagnosis since it can have a false negative anyway. Your doctor is after as much money as he can get. He wants two seperate charges for two seperate procedures that can both be done at the same time. I agree with Peter, if you are having these procedures done you should have them both at the same time. Another option is going gluten free and if that takes care of your issues the resolution of the problems and your high blood results are pretty diagnostic, IMHO.

Arcana Newbie

Thank you for responding. I did end up calling the doctor's office and rescheduling the procedures for the same day. Not sure why they did that though.

I am reluctant to eat gluten again after five days of feeling good, but I guess I have to. It makes me angry, because I feel like this could have been avoided. I finally have some hope after almost a decade. In the past I have been seen for:

* Diarrhea/bloating/cramping/nausea, which was blamed in IBS

* Extreme fatigue

* Hair loss, which was blamed first on genetics and then stress (no, seriously, my doctor prescribed WINE)

* Mouth ulcers, sometimes eight or more at a time, which was also blamed on stress

* Red, itchy and burning areas on my skin and scalp

* Loss of concentration

And overall just feeling horrible, all the time. Usually my doctors treat me like I'm making it all up (and I wish I was). Thus, I have turned to the wealth of largely anecdotal information available on the internet. I welcome it with love and open arms!

Skylark Collaborator

I'm glad you figured out the cause of your health issues! A little more time and you can stop eating gluten for good, no matter what the biopsy says.

Your doctor prescribing wine reminds me of mine, who told me to stop drinking coffee for my gastritis. If he had only said to stop eating gluten...

ravenwoodglass Mentor

Thank you for responding. I did end up calling the doctor's office and rescheduling the procedures for the same day. Not sure why they did that though.

I am reluctant to eat gluten again after five days of feeling good, but I guess I have to. It makes me angry, because I feel like this could have been avoided. I finally have some hope after almost a decade. In the past I have been seen for:

* Diarrhea/bloating/cramping/nausea, which was blamed in IBS

* Extreme fatigue

* Hair loss, which was blamed first on genetics and then stress (no, seriously, my doctor prescribed WINE)

* Mouth ulcers, sometimes eight or more at a time, which was also blamed on stress

* Red, itchy and burning areas on my skin and scalp

* Loss of concentration

And overall just feeling horrible, all the time. Usually my doctors treat me like I'm making it all up (and I wish I was). Thus, I have turned to the wealth of largely anecdotal information available on the internet. I welcome it with love and open arms!

The red itchy burning areas may be DH the skin form of celiac. Hopefully the diet will resolve that but do be aware that you should avoid iodine at first to heal it the quickest.

I am keeping my fingers crossed for you that adding gluten back in after only 5 days gluten-free will not have too bad of a reaction. If however you should have a violent response to adding gluten back in contact the doctor. If the diet had resolved some of the issues you had and going back on gluten makes you sick again that in itself is pretty diagnostic.

cap6 Enthusiast

ravenwoodglass - you mentioned dry itchy burning areas could be celiac. I have been gluten-free for 10 months. Before going gluten-free and even now I get dry, red & burning areas around my lips. Actually I look like a kid with major chapped lips. Embarrassing! I was using Burt's Bees but have switched to plain vaseline as a lip gloss. Any thoughts on this?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

ravenwoodglass - you mentioned dry itchy burning areas could be celiac. I have been gluten-free for 10 months. Before going gluten-free and even now I get dry, red & burning areas around my lips. Actually I look like a kid with major chapped lips. Embarrassing! I was using Burt's Bees but have switched to plain vaseline as a lip gloss. Any thoughts on this?

Are you sensitive to soy? I can't use most lip products because of my soy sensitives, both allergy and intolerance. My lips will become raw and peel like they have been burned with a product with either soy or wheat derived vitamin E. My lips do better using nothing.

Also have you been taking a good supplement with high levels of B vitamins? If the red raw areas don't resolve using Vaseline you may want to supplement if your not. Low levels of certain B vitamins, sorry can't remember which ones, can cause cracking and redness.

cap6 Enthusiast

Thanks. I have a dr appt coming up & will have levels checked. I am learning that I need to request copies of ALL tests & have my RN friend go over them with me. I am fighting with my insurance so have an approval done so that I can see a Celiac specialist. I am not sure about the soy. I have tried to cut out anything with soy but I know they sneak it in with ingredient names that aren't english! Thanks for the advice.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,167
    • Most Online (within 30 mins)
      7,748

    Renira Boodhraj
    Newest Member
    Renira Boodhraj
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kj44
    • mariamccl
      Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor sent me a letter yesterday saying this " biopsies from the duodenum show some very mild features that could be in keeping with celiac disease but also could be due to other causes". I am waiting on an appointment to see him in the clinic to discuss this but in the meantime I wanted to check if anyone else has experienced this? I was eating plenty of gluten before my camera test and for the past 2 weeks have completely cut it out of my diet and I'm seeing changes in my bowel movements for the first time in my life! Headaches, dizziness etc are still there but maybe it takes longer for them to go away? Any help would be so appreciated -  I feel so lost in this whole process!! 
    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
×
×
  • Create New...